9.10.2010

No Rejection. And some Memories.

After 10 hours away from home, we were able to leave the hospital with a little Gracey in tow. The biopsy went well. They didn't have to balloon or stent open her aortic arch. The pressures have gotten a bit higher, but her function is still great. So, it will still hopefully be another couple of years before they have to do any corrective work on that front.
Recovery was pretty tough. We all know how energetic and stubborn Grace is, and they wanted her to actually lie down, flat for SIX hours. Can we say CRAZY!?? But by some miracle...we were able to do it. Yes, we. It was a team effort to keep her down.
Topher actually had to leave for school around 7:15, and Grace went in at 7:30, so I was alone for most of the day. When she came out at 10:00, Topher came back for about 30 minutes inbetween his classes to see her, and then it was just me again until about 2:00. We took a nap, watched t.v., told stories...and then there was of course a few moments where we had to fight and argue because she did not want to hold still and she did not want to lie flat, and she especially did not want to be told 'No' a hundred times to all her requests. But somehow, we made it through.
After some throwing up, lots of good vitals, prayers and patience, we made it and were able to head home around 3:00. She has been pretty drowsy and out of it. Sadly though, no silly drunken Grace has emerged like last year to entertain us. Bummer! :)
I do however have some funny phrases from the day:

At 5:30 a.m. this morning, driving to the hospital...
"Mommy, where we going?"
Mommy says, "To the Doctor"
Gracey- "Have my biopee. I not scared."
cue my jaw dropping. Did my 2 yr. old seriously just say biopsy???! I never taught her that word!! Talk about a good listener.

When they gave her an oximeter on her thumb to measure her oxygen levels...they told her they gave her a pretty red light...
"Mommy, who gave me dat?"- pointing to the red light
"Your nurse Tammy did."
"Oh. Dank you Tammy."

After throwing up from drinking too much juice, begging for more, and my saying we need to wait a couple minutes...
"We need to give your tummy a chance to rest sweetie"
"But momma, I want my juice so bad. I won't frow up. Pomise. I not be sick."

After doing her third time throwing up...she flashes me a HUGE smile...
"Mommy! I all done! Feel bettuh now! All done!"

After she woke up from her nap...
"Mommy! Had my biopee! All done now! Cap for me! "(cue her clapping with an exuberant smile on her face.)

When Topher came back from being at school..."Daddy! You back! Good job daddy! Oh, you have your lunch?! You no forget? Good job Daddy!" (cue clapping again)

At home, giving her a meager diet of food, to transition her tummy...Topher hands her 1/3 of a banana...Grace eyes it with raised eye brows, then says very skeptically...
"Dad...is that my dinner??"
"Yup"
"ok". and runs off to play happily.

What a stinking cute.I love her to pieces.

Some other things that crossed my mind today were just memories of where we've been and how far we've come. I had quite a bit of time on my hands during her biopsy, and I decided to use it up by wandering the hospital aimlessly. My wanderings took me to the 4th floor where the Newborn Intensive Care Unit is located. I couldn't stop the tears from coming as I walked down the hall, truly realizing just how far we have come as a little family, as individuals, and especially how far my little Grace has come. It was only 2 years ago that I thought the whole thing would never end and that I thought a solution would never exist that would give us happiness and fulfillment with our baby. I remembered all the feelings of hopelessness, but then remembered how each of those moments of feeling helpless were tempered with the kind mercy of Heavenly Father. He truly watched over us and kept us under his wing through that first 5 months of her life, and past that as well. To this day, I still can't actually believe that we made it through what we did. People I barely know will stop and tell us how amazed they are at us, but I always feel so ridiculous and undeserving. I didn't do any of it on my own. Everything was done with Heavenly Father holding my hand, pushing or pulling me, and sometimes carrying me completely.Topher and I would have melted in a heaping ball of tears if we had done it on our own. We would have given up. More so, not only would we have not made it through, but we would never have grown in any way.
I am truly amazed at Heavenly Father. At the love he has for us. At his endless mercy. At his infinite knowledge of our nature and capacity to endure and potential to grow.I am so grateful that he loves me so much, and that he has never deserted me. I'm so grateful he has stayed with me through thick and thin. He was with us in every room, and floor of the hospital, through every surgery, biopsy, cath lab, echo, blood draw, ng placement, long night of feeds or fussiness. He has never left us. And I am truly humbled and amazed that anyone could love me that much.
I apologize this post has turned into a mouthful of testimony. But I am overwhelmed at the moment at how blessed my little family truly is.
All of this is what I came to a realization of today while wandering through the hospital waiting to see my baby's sweet face again.
Once again we were blessed with perfect results. The hospital called and Grace has no rejection. None whatsoever. She could not be healthier.
Now, medicine and science say that that will not last forever. She can't live on this one borrowed heart forever. But my faith in God's love for me says that Grace will be just fine. She will continue to grow and flourish, to smile and love and to pout and sass. No matter what we have to face in the coming years, she will be o.k. because our Heavenly Father loves us.
Im grateful for my family and little girl that is so beautiful and sweet, and such a miracle. And Im grateful for the reminder. I needed it. Makes me wish biopsies were more than once a year. ;) Or......
maybe not. :)
z

Biopsy Day 2010

Hello all. It is that time of year again. No, not for the beautiful fall weather, but for Gracey's annual heart biopsy. We woke up at five, got to Primary's at six, and grace just went back with the team at 7:30.
She did not go back happily either. In fact, she was crying, bawling, and begging me to not leave. It broke my heart, but i waited to start crying until she couldn't see me anymore.
I think that is some thing that is so unfair and hard. Acting strong for her so she is less frightened, when really I am shaking in my boots and want to cry for my mommy as well.
I sure hope it helps her a little to see a smile on my face instead of tears.
Anyway. The whole biopsy will probably take about 3hrs. There is the potential of her aorta condition having worsened, in which case they would need to place a balloon or stent, and then the procedure would take longer.
Afterwards, she'll go into recovery, hopefully wake up happy and then we'll also need to do an Echo and a visit with Dr. Norlin.
So. Prayers would be very much welcomed today.
Thanks so much for your concern for us, and for little Graces well being.
We love you all,
Alysia & Topher
And of course Gracey